Big data can drive advances in children’s health
19.02.20
More than 35,000 children and young people are diagnosed with cancer every year, making paediatric cancers a major public health and societal issue. More than that, childhood cancers take an emotional toll on our families and communities: by leading to premature death and reducing quality of life, paediatric cancers represent a huge loss of human potential.
This week’s International Childhood Cancer Awareness Day (ICCD2020) event organised by SIOPE in the European Parliament was a chance for policymakers to hear from academic and industry experts, as well as clinicians and patient advocates.
The meeting, hosted by MEP Patrizia Toia, put the spotlight on artificial intelligence (AI) and big data. I was pleased to have the opportunity to highlight some of the challenges facing researchers and the positive ways in which digital tools might help make the medicines development process more efficient.
Bringing trials to children
One of the biggest problems in paediatric research is recruiting and retaining clinical trial participants. For childhood cancers, this can be compounded by the fact that many paediatric cancers are rare diseases.
Digital technologies can help by facilitating trials at home, using sensors and apps to collect real-world/real-time data, developing digital patient-relevant endpoints, using virtual control groups and through AI-enhancing data mining.
These approaches are slowly going mainstream. Real-world data, for example, is being harnessed to understand disease epidemiology and treatment responses, in safety monitoring, in Health Technology Assessments (HTA) and much more besides.
Digitally enabled clinical research in paediatric cancer is slowed down by a number of bottlenecks. However, momentum is gathering in Europe to address these challenges. Not only is there renewed political focus on Beating Cancer, there is also fresh impetus behind the push for a Digital Single Market for Europe.
The European Health Data Space aims to do more than simply improve cross-border access to data. It will tackle data interoperability and standardisation, while seeking to connect digital infrastructures across the EU.
At the same time, we are seeing advances on the EU’s AI strategy, with a forthcoming consultation offering an opportunity for all stakeholders to address uncertainties together. And the HMA/EMA Joint Big Data Taskforce report offers specific solutions to overcoming the hurdles we face.
Partnership platforms
As the challenges we face are significant, collaboration will be essential as we move forward together. Several IMI initiatives, including BD4BO, ITCC-P4 and EHDEN, are helping to contribute knowledge, capacity and tools that will help to accelerate drug discovery.
In the end, we hope to enrich clinical research and the wider healthcare environment with new data sources. This offers real benefits for health systems by making the process of developing, testing and adopting medicines more efficient. For young patients in need of treatment, it brings hope of new therapies.
Getting together to understand questions and uncertainties for all parties and addressing them in collaboration to derisk the use of technology in research, development and health delivery process is one condition of success. The other one is to make sure to scale up the great pilots and case studies developed in European funded research. There is no time to loose in reinventing the wheel, and the just released communications on the European strategy for data, Shaping Europe’s digital future, Artificial Intelligence and its implications offer a great momentum to accelerate progress.
With childhood cancers – and many other conditions where there is major unmet need – embracing data is a win-win. We look forward to continuing to work with others to build our data-driven future.
